How I Found My Way to the CTNNB1 Connect & Cure Board

I recently sat down with host Toni Paes on the CTNNB1 Connect & Cure Podcast to share how I came into this community.

My path here started with my own genetic diagnosis story. That experience opened a door I didn't expect, and it was Effie Parks, host of the Once Upon A Gene podcast, who invited me in to the world of CTNNB1. From there, I started volunteering with CTNNB1 Connect & Cure, and the more I got involved, the more I knew I wanted to do more. So when I was asked to join the Board of Directors as Chief Operating Officer and Secretary, I said yes and I officially stepped into the role in January 2026.

On the episode, I talked about what that role actually looks like day to day. As COO, a lot of my focus is on the behind-the-scenes work that keeps an organization healthy: streamlining our business operations so the org runs more efficiently, and making sure our time and energy go where they matter most. I'm especially excited about building out a strategic plan and optimizing how we operate.

It's meaningful work, and I'm grateful to be doing it alongside a board that cares deeply about this community.

If you'd like to hear the full conversation, ncluding more of my story and what's ahead for the organization, you can listen below.

To learn more about CTNNB1 Connect & Cure, visit curectnnb1.org.